Sunday, September 25, 2011

Am I Gluten and Dairy Intolerant?

I think so.

Since my wisdom tooth surgery, I have been being nicer to my body and getting more protein. Part of that involved paying more attention to my metabolism - which right now is kind of crazy slow. Lame. But I digress. In paying more attention to that, I noticed that certain things make me feel horrible - not just sick to my stomach horrible, but I noticed that my RA starts to flare up more after certain foods. I thought maybe it was junk food. So then I cut back on that again and felt a little better. But the healthier I eat, the more I notice other issues.

When I eat things with a lot of wheat, or really any bread, my asthma picks up. And then about 20-45 minutes later, I feel crazy sick to my stomach. So I stopped eating bread. And then I noticed eating cereal did the same thing. I love cheese, and noticed the same thing while eating some.

And it occurred to me that what I've heard from people for years about dairy and wheat agitating RA could be right. So I stopped eating those things as much and have noticed that my arthritis is calming down.

Gluten intolerance symptoms are here. I'm amazed at how many I experience, and even more amazed that listed on there is juvenile idiopathic arthritis. It's just crazy. Lactose intolerance symptoms are here. I've always had rumbly tummy noises (to quote Pooh Bear), but never really knew why. Now it makes sense.

Supposedly, along with gluten intolerance comes an intolerance to fructose and sorbitol. Sorbitol I don't really encounter, because it is mostly in gums and diet foods and such that I can't have because of my allergy to phenylalanine. But frutctose I encounter a lot... because my worst vice is soda. I've always used caffeine to help control my pain, and I know that I shouldn't for many reasons, but I do. Oops. I also noticed recently that soda tends to increase the pain that I feel in my hands. So that's fun. I'm down to one soda a day (mostly) but have also noticed that I'm drinking alcohol more... which supposedly also helps RA be less intense. And I'm not an alcoholic looking for an excuse - there are studies! I promise!

So in the past few weeks, the boyfriend and I have begun eating at home more, incorporating more healthy grains and vegetables into our diet. We still eat out one or two days a week, but we save it for the weekends (or special occasions) and it's only one meal a day. We are spending more money at the grocery store, but less money elsewhere, and that is also helpful. It's not always easy to find foods without dairy or gluten, but I'm finding out the best places to look, and that's a start. Whole Foods has a lot, but so does Woodmans, a local grocery store.

It's fun to eat healthier, and I feel so much better lately. The only thing that will make it better is my upcoming job change. Standing on my feet for 8+ hours, the stress, and all the things I end up doing extra are not worth the pain that I then experience... especially since it seems as though my current employers could really care less about the accommodations that I need... which is really sad, but oh well I guess. I could be mean, and take it further, but since I'm leaving I won't. I'll just get excited about this being my last real week, save two more shifts the weekend after next.

Tuesday, September 20, 2011

PFAM: A Call for Submissions

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here's September, and not only am I beginning to eat healthier, but I'm also changing jobs in a few short weeks.

So with that in mind, here's the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I'm excited to see what happens with the upcoming changes I'm making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog's name
3. Your post's title
4. Your post's URL
5. Awesomeness

I'm excited to read about the changes you've made in your life!

Friday, September 16, 2011

Invisible Illness Week 2011

I know I've done at least one of these '30 things' posts... But I feel like my answers could change all the time, and it's worth posting again so here goes.

1. The illness I live with is: Still's Disease/Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1994ish?

3. But I had symptoms since: November 1993

4. The biggest adjustment I’ve had to make is: learning how to rest lately

5. Most people assume: that I'm fat, lazy, and don't feel like I have to do anything. Yay me!

6. The hardest part about mornings are: dealing with morning stiffness and pain

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: my iPod touch - it really does everything

9. The hardest part about nights are: getting to sleep

10. Each day I take __ pills & vitamins. Well that varies for me - anywhere from 3-7.

11. Regarding alternative treatments: I've recently figured out that lactose, gluten, and stress largely increase my pain, so I'm trying to cut down on all three. Also, yoga is awesome.

12. If I had to choose between an invisible illness or visible I would choose: In the past I've been on the fence with this question, and I still think I am. I'm tired of people assuming I'm using my disease to be lazy and work less and have things go the way I want them. But I also would rather deal with that then possibly being in a wheelchair. Sooo, I don't know really.

13. Regarding working and career: I'm in the middle of switching jobs, but I'm basically working to pay bills while I'm going to school right now.

14. People would be surprised to know: how I work through such intense pain. They think I use my disease as an excuse, but they also don't see me struggling to walk in my own apartment... 

15. The hardest thing to accept about my new reality has been: having to slow down so much compared to when I started my blog. It's really hard to deal with the fact that my body is getting worse and I'm really scared about what this will mean for my future :(

16. Something I never thought I could do with my illness that I did was: be happy

17. The commercials about my illness are SO misleading. They depict people who can finally run around again... Not to mention they ALWAYS depict older people, thus continuing the stereotype of arthritis as an old person's disease.

18. Something I really miss doing since I was diagnosed is: Not a lot really changed, because I was so young.

19. It was really hard to have to give up: I miss running. I don't get to do it that often anymore.

20. A new hobby I have taken up since my diagnosis is: everything! What hobbies does a six year old really have? :)

21. If I could have one day of feeling normal again I would: go run a marathon

22. My illness has taught me to: slow it down

23. Want to know a secret? I want to punch people in the face when they suggest a ton of vitamins and supplements.

24. But I love it when: people try to understand even though I know they can't.

25. My favorite motto, scripture, quote that gets me through tough times is: "Don't be better. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life." - Stephen Colbert

26. When someone is diagnosed I’d like to tell them: keep your chin up and find a doc that really believes you. Get a great support staff going and learn as much about your disease as you can - it'll help you educate others.

27. Something that has surprised me about living with an illness is: how rude people can be about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: my boyfriend is constantly doing things to help me cope, from helping me accomplish tasks to providing emotional support.

29. I’m involved with Invisible Illness Week because: no one knows what it's like, and I've bee dealing with this forever. I want to get people to understand better.

30. The fact that you read this list makes me feel: sorry if you've read it before, but grateful that you've spent the time to learn more about me!

Tuesday, September 13, 2011

When Ugliness Returns

I was SO excited after my wisdom tooth surgery - my arthritis had dissipated and was calm. Everything was wonderful...

Until the Friday afterwards, when people at work fought and I got to go deal with it. Ugh.

I won't get into the whole situation, but just a few days before as soon as laughing gas hit my face, my body was perfect. Yeah, okay, so I had some gaping holes where a few teeth used to be, but other than that... Returning to work made my body hurt exponentially more.

So what did I do?

Well, I've found a new job and will be starting that in early October. While I will be sad to leave some of the people that I currently work with, being in management while going to school and handling this disease is just not something I can do. Part of me feels like I'm giving up, but the other (bigger) part knows that I'm doing what's best for me and that I'm being realistic.

My new job will let me sit down all the time. I won't have to run around and move heavy things. I also have no direct interaction with angry people, nor do I have to make it right. Instead, I will spend my time captioning  one half of a phone call in order to help people who are hard of hearing better understand their friends, loved ones, and random people. So I also get to feel a lot better about what I do for a living.

And they have benefits. I dunno what they will be like and won't know until orientation I'm sure. But that's exciting, and hopefully helpful. And I will get full time hours too. Yay.

Now I just need to get through the rest of the month and the six days I will have to work overnight before I am done. And talking to my boss tomorrow morning. Awesome.

Sunday, September 4, 2011

La Vie Boheme

The latest Patients For A Moment (or PFAM) blog carnival topic focuses on music, which I absolutely love. Phylor has asked us to explore, essentially, the soundtrack to our illness. I find it funny timing that she would pick this topic. Here's why.

Last Sunday, while amping myself up for my wisdom tooth surgery the following Tuesday, I did something that I've always wanted to do. I woke up late. I popped open a gigantic bottle of Arbor Mist Sangria, my favorite wine. And proceeded to drink... while watching the Blu-Ray DVD Rent: Filmed Live on Broadway. It is the filmed final performance of the one play that I can say changed my life.

When I was in high school, I was in an abusive relationship with this kid pretty much from my sophomore year until graduation, give or take a few break-ups in-between. My senior year of high school is when the bulk of the break-ups came, because I realized what a bad situation I was in and I knew I needed to get out. Up until then, I had a kind of 'whatever' mentality regarding things. I knew that people didn't believe I had an illness, especially with the lack of doctor's visits due to my family's income. I figured that I had found the best I could get - which clearly I now know was so far off.

The biggest change my senior year of high school was that my best friend, my uncle Nathan, moved back to Eugene with his family. Having just gotten out of the army, they moved in with us. Nate has always been a huge help and encouragement to me. So when he and his wife introduced Rent to me while I was home sick for a few days, my eyes opened up to a lot of things. Each time I listen to or watch Rent, I take something new away from it. While I enjoy the movie, released in 2005, I will always love the music itself more. But watching the actual play, on Broadway, was sadly something that I wasn't able to do. So when I saw this DVD last weekend at Barnes & Noble on clearance, I snatched it up quickly.

If you don't know the basic story line of Rent, it's about a group of friends dealing with disease, discrimination, relationship issues, poverty - life, essentially.

Here are just a few of my favorite songs and lyrics from Rent:

One Song Glory:

Find/the one song/before the virus takes hold/glory/like a sunset/one song/to redeem this empty life/time flies/and then no need to endure anymore/time dies

Life Support:

Look I find some of what you teach suspect/because I'm used to relying on intellect/but I try to open up to what I don't know/because reason says I should've died/three years ago

Will I:

Will I lose my dignity?/Will someone care?/Will I wake tomorrow from this nightmare?

But my favorite song above all is I'll Cover You. If I posted it, I'd just end up posting the whole thing. The lyrics are here and the song itself is here. The reprise is here and, no matter how many times I watch or listen to this play, I can usually hold back tears except for when Collins begins to sing. His relationship with Angel is so sweet and, spoiler alert, when Angel dies because of AIDS, it is the saddest thing.

But not all of the music from Rent is sad! Check out songs like La Vie Boheme and Out Tonight. Rent has something for just about everyone, and is truly a celebration of life - with all the good and bad included. That's why I really think it is the soundtrack to my illness. I have good times, bad times, and horrible times as well. There are times when I want to go out and dance my butt off, and other times where I feel like no one is there for me and I'm all alone dealing with my disease.